- 期刊
末期肌肉萎縮症病人之安寧療護經驗：一個案報告
The Experience of Hospice/Palliative Care for The Terminal Patient of Muscular Dystrophy: A Case Report
摘要
安寧療護為針對生命遭受疾病威脅之病人與家屬的一種照顧方式，因此適用於所有末期病人。台灣安寧療護雖然已由癌症末期推展至漸凍人及八大類非癌症末期疾病，但仍有少數罕見疾病末期病人因不符健保安寧範疇而無法接受照護，神經肌肉疾患（Neuromuscular Disorders, NMD）便為其中之一。神經肌肉疾患是兒科中遺傳性神經肌肉疾病的統稱，肌肉萎縮症屬於其中1種，文獻指出此類病人因疼痛狀況被低估而導致疼痛控制不佳，且長期病症亦對病人及家屬造成極大的生理、心理、社會經濟、靈性等問題，因此需要安寧療護的全面性照顧。本文報告安寧團隊照顧一位末期肌肉萎縮症病人之經驗，並探討照顧過程中遭遇的臨床問題和相關的規範。
並列摘要
Hospice/Palliative care is generally recommended for terminally ill patients and their families. In Taiwan, hospice/palliative care was initially provided for patients with terminal cancer and then expanded to cover patients with terminal motor neuron disease and eight categories of non-cancer end-stage diseases. However, patients with certain rare diseases, such as Duchenne muscular dystrophy, are not eligible for hospice/palliative care because they are not included in the current categories of diseases covered by Taiwan's National Health Insurance plan. Duchenne muscular dystrophy is a hereditary neuromuscular and sometimes terminal illness in children. Based on a review of the literature, chronic pain in patients with this disease is underestimated and may be undertreated. Duchenne muscular dystrophy causes patients and their families great physical, psychological, socioeconomic, and spiritual suffering, which strongly suggests the need for hospice /palliative care. This case report presents the experience of a palliative care team taking care of a patient in the terminal stage of Duchenne muscular dystrophy and the clinical problems and associated regulations encountered.